Friday, September 10, 2010

Actually got there early because I was concerned about a traffic report I was hearing so took the toll road up to Colfax. Yeah, 1/2 an hour early.But they had people there already so didn't have to wait long and they started early. Did the whole weighing (42.2 lbs) and measuring (41.5 - with flipflops so I'm calling it 41 even), blood pressure and temperature stuff.Then they took us to our own private little room where they put the cream on her arms and plugged in the first dvd (the Squeakquel followed by the Princess and the Frog and then DragonTales episodes at the end) to start watching. They also took her order for breakfast (scrambled egg, bacon, banana and milk). Yep, when she was done they fed her breakfast instead of just shoving her out the door like I remember happening.When they came to put in the iv contraption I told them that she doesn't like distractions (blowing bubbles etc) and in fact likes to watch. The nurse laughed and said "we've heard about her" and the other nurse that came in to help hold her arm just started unwrapping stuff. I admit I was proud to hear that she had a positive rep that extended over to the hospital. While this was happening we started getting a lot of visitors.The lady from Trialnet (the prevention study) came to go over the paperwork and releases and I got to sign and initial a bunch of stuff. The lady from TEDDY also came in and both made their requests for blood. It was funny watching them all stand there in amazement (new TEDDY lady) while Miranda just put her arm up on the arm of the chair and they stuck her. They started sharing horror stories (including the boy who freaked AFTER all the needles were stuck and he'd drunk the sugar liquid - in other words after all the hard stuff was done)Fasting blood was 82 and they took about 55ccs of blood then. A short while later they came back and took the first blood samples for the glucose (they wait for the child to calm after the initial stick before starting) and asked Baby what flavor she'd like to drink (lemon-lime). They came back with that and she was given 5 minutes to drink it but it didn't take her that long. Another set of blood samples (3 each time - small stick tubes) was taken and then again every half hour for the next two hours. (After 2 hours was 121)During that time TEDDY came back (A1C results were 5.0) and had me do some of the questions they ask every time and then gave us a meter, test strips, lancets and ketone strips. They had me do it on myself, another nurse (who is a diabetic - got to ask her some questions about the pump) and then test Baby but two attempts on her didn't get me enough blood for a valid test. They were satisfied that I knew what to do anyway so it's all cool. I'm supposed to test her a couple times a month and every day if she's sick. I'm also supposed to use the ketone strips if she's sick and especially if she vomits. They also gave me a beginning book on diabetes so I'd have more information, phone numbers for questions, phone numbers for use if her numbers are high on a weekend or at night etc.I'll get two separate sets of results. One in 3-5 weeks and the other in 4-6 weeks but I forgot which was which. TEDDY will be their standard antibody test and the Trialnet will give me the full sugar results and I'll hear about some gene markers they are testing for which should give me a better idea of risk.

Friday, September 3, 2010

Got the actual paper/letter with the results today. Not only did she get the second positive but her numbers jumped up again on the other one.I get my last UI check in two weeks and it's only for one week. I qualify for state extended benefits but will only get that if the federal government does another extension that goes through the end of this month. At least.So I'm desperate for a job with good pay and great insurance AND the flexibility I'll need for her testing etc.

Wednesday, September 1, 2010

Got to talk to the doctor. Finally. (Part of the whole communication fiasco). She basically reiterated everything I got from the nurse yesterday. May have screwed up though because she asked me if the father had been treated there and what his name was and I told her. It didn't dawn on me until I hung up that if he was treated there then she would know his parents etc and I may have let a cat out of the bag. Hopefully doctor/patient confidentiality will cover me.On a side note if I read the paperwork correctly (they emailed me a copy besides the set they are mailing) then as long as she is showing 2 positive antibodies then she'll have to do the glucose tolerance test every six months. What ever job I find better have some flexibility built in if I'm going to have continue to deal with this.

About Us

I'm a single mother with a 4 year old girl, Superhero Baby. Her name for herself. She can do anything. The problem? Her "father" is a Type 1 Diabetic and she has the gene. She's part of a study, so we know she is positive for all 3 antibodies. We've been told it's not "if" but "when". Odds greater then 50% that it will be within the next 4 years.
There is no support group for those standing on the edge of the cliff.
So I research and research and take my daughter in for her ogtts every 6 months, her antibody tests every 3 months and test her bg at home a couple times a week and hope.